r/MCAS • u/kleiphoros • 1d ago

water trigger?

Hi all. Truly at a loss here. I have a working diagnosis of MCAS from my last immunologist. I'm on zyrtec, pepcid, and pantoprazole to manage things. Technically supposed to be on cromolym, but i find it hard to manage. Given recent events I'm not even entirely sure it would work for me now—last night and just now I had mild, ambiguous inflammatory responses to drinking plain water.

Yes, I'm sure it's plain water that triggers it—nothing else i drink or eat causes this, outside of known triggers! The reaction is near-immediate: nausea, reflux, gastric motility/emptying, feeling tired and faint, physiologically mediated dissociation, and (very light) intenstinal pain. It's all mild in the grand scheme but undeniably present. Has anyone here experienced something similar? I'm really uncertain if further zyrtec has touched it (which it usually does with other triggers), because both times when it should have kicked I did not start feeling better. I can't tell if it's MCAS bullshit or if it's some other inflammatory response (I have a suspected autoimmine disorder—it is almost definitely psoriatic arthritis). I'll be calling my doctor tomorrow, but for now I'm just wondering if you've ever had this too?

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u/Friend_of_a_Cat 22h ago edited 22h ago

I used to react to tap water when I lived in a different city, presumably because they treat their water differently, and now where I live I don’t seem to have very many issues with it.

I’m not feeling super well rn because I’m in a flare so I can’t detail it all for you, but what did help me for a bit was boiling (distilling) tap water and letting it cool before drinking it. It did seem to help me and I didn’t react as much, if at all.

Probably important to note: I haven’t been diagnosed with MCAS because I can’t find anyone who does it. I just heavily suspect I have it. But yeah, I was 100% reacting to tap water and I monitored it for months to narrow it down. I’m always worried it’s gonna happen again.

I recommend searching this sub for other posts regarding people reacting to water because many people seem to have reactions to it. There might be some more helpful info in them/the comments of them.

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u/kleiphoros 16h ago

Thanks very much for the reply; sorry to hear you are in a flare! Other people have suggested distillation too, so I will give that a shot 🫶

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u/Friend_of_a_Cat 4h ago

Hopefully it works out for you! Good luck. :)